The heart thing

***This was meant to be an explanation.  It ended up being The Story.  If you don't want to read an icky story with a great 80's tune attached, skip this.

I started this to talk about the voices in my head my daughter's heart and her evolving - never boring - health life.  What I hope will be a healthy and long life.  The husband Database challenged her to try to visit all the doctors at Children's.  By that, I mean he asked her if there were any other specialists she wanted to meet while we were at it.  She has picked up 2 or 3 since then. 

Right now we see:

Cardiology
Cardiology/Geneticist
Endocrinology
Nutrition
GI (Gastro-intestinal)
*Neurology (not yet seen)
*Neurosurgeon (not yet seen)

I think that is all but I could actually be forgetting one.  The short story (and it's pretty long) is this.  Moe was born 2 weeks late by natural delivery at a birth center induction at a hospital.  She was induced because they thought she had IUGR (intrauterine growth restriction).  For her this means she was normal size but at the end her growth slowed or stopped and they thought the placenta was breaking down so she had to be born ASAP.  As it turned out, the placenta was fine and they think she was small because of her heart.  Fast-forward zen-medicationfree birth in a jacuzzi psychotically painful "natural" birth on pitocin and out pops my daughter who did not, as I suspected, rip through my pee hole.  She had low blood sugar.  The hospital made a mistake and didn't give her enough salts in her IV so she had low sodium and was at risk for seizures and death and on day 3, gets transported to Boston Children's.  (I don't plan to give away my address, phone number, or shoe size) but I have to give props to the people who saved my baby's life and who continue to keep her in the Good Zone. 

Day 6 - Moe is getting much better & goes to a community hospital near my house.  That night she gets tachypnic (way fast breathing) and goes back to Children's. 

Days 7-22ish - Moe is in the NICU and then Cardiac Floor as they discover that while her blood sugar/ electrolyte balance is great now - her heart is failing.  Like really failing.  The day the doctor told us this information, I really didn't get it.  It was like a black out in my head where I heard his words and his "I'm sorry" but I still didn't get it.  It was hours later and the silence from The Database that made me realize this was Real.  Not Fixable.  BAD.  Test and more tests and mind numbing days of procedures and pretty much no sleep.  Moe gets diagnosed with Cardiomyopathy - Left Ventricular Non-Compaction.  Her ejection fraction was as low as 23% I think.  40% or less = congestive heart failure.  60% or better = normal.  Babies like this get listed for heart transplants STAT.  But she looked and behaved and fed and slept like a normal, healthy, but petite baby.  Her doctors were puzzled but we were assigned to the transplant team anyway.  And I love them.

Around 3 weeks, they sent Moe home with a Crap Ton of medicines.  We were beyond terrified and I expected her to quit breathing pretty much after every breath I watched her take.  Days became weeks became months.  Since then she has picked up additional diagnosis of a possible Mitochondrial Disorder, Hypothyroidism, Failure to Thrive, Dairy Protein Sensitivity & um maybe that is all.  She has fallen off the growth charts and is now back to 2% which has us dancing on the ceiling. 

It's been insane but she is off all her heart meds and is currently functioning in the normal range.  Her docs can't explain the recovery but she has been amazingly well on the outside through it all.  She is cute and awesome and smart and all those things you want your baby to be.  Go Moe!

Ugh, so that's the story.  I feel I have explained nothing so I will add a disclaimer at the top.